How to bend fate in the health care field

Data that matters to patients

Distractions didn’t have a chance. My phone was devoid of reception. The New York Times mobile application searched impossibly for a Wi-Fi connection. Conditions perfect for focus: away from a world always on and connected, noisy, and belligerent with information overload. I could have found joy in a single byte. But instead, I was pushed to the limit of sensory deprivation, and I teetered on the edge of insanity. I spent nine hours of my life in a hospital waiting room.

There were twelve of us. Long sighs passed around the room while the television looped the same program for the third time. A young observant Jewish man paced left and right. Every 20 minutes, his phone played a “meditative” 30-second jingle: a repetitive crescendo of madness catching the rest of us unawares.

After four hours, one woman reached her limit and lost it. It worked. She received “treatment” immediately—from hospital security. A dose of the healthcare system’s equivalent of a stop and frisk.

I was watching and waiting. I was also thinking, while reading a white paper titled “The ‘Big Data’ Revolution in Healthcare.” Produced by the illustrious consulting firm McKinsey and Company, it hailed big data as a transformative force in healthcare. Its capabilities marketed as endless, spanning from cost-reductions to outright cures.

But data as it stands today didn’t do a damn thing to help me. Having spent half a day in healthcare handcuffs, I felt physically and emotionally drained. I wonder if the authors of the McKinsey report would have felt the same if they had been in my seat that day.

A Split Aristocracy

For the majority of patients, data just doesn’t matter. And as makers and thinkers in the data community, it’s our fault.

Let’s first define what kind of people the data community is comprised of. In many ways, it is an elite technological aristocracy: a well-educated group with technical prowess and in some cases unprecedented access to data. Many possess the cross-disciplinary statistical skills required to understand data, as well as the engineering skills necessary to build and use data analysis tools; a rare combination in the technology world.

But among these attributes, there are those who carry a sharper sword. This is the ability to understand and seize market opportunities. Unfortunately, the data community is also split unevenly. A small percentage tries to create tools to empower people, and the other side has succumbed to greed, either by their own volition or by obligation to a master. In their report, McKinsey refers to this latter and larger group as the “stakeholder” in healthcare. These are insurers, pharmaceutical companies, and providers.

Notice anything funny? Patients are not explicit stakeholders. It is McKinsey’s version of the “stakeholder” that is now threatening to use data to secure a grip on healthcare so tight, that there will be no way to ever pry it free.

“Stakeholders” are smart, and have powerful friends. Bit by bit, they are smuggling data away under the guise of promises that have more in common with advertising than an empathetic view of the predicament that traps patients today. Without intervention, “stakeholders” will soon determine the fate of healthcare.

I’m talking here to the group of data aristocrats who disagree with the direction of the “stakeholders.” Data can evolve and its reach can expand, so that everyone can benefit from its potential. But seizing that opportunity means making data matter to people on a fundamental level; people outside the data community.

The only way to accomplish this, is to reframe the approach on the level of design. This involves the creation of tools that allow patients to gain leverage in the healthcare system. This will be a challenge, because to transfer the powers of data to the patient, we must turn away from the current focus in healthcare—not only on diagnoses and treatment, but on data itself. What we can do is design tools that focus on the acute emotional needs of the patient. That will loosen the grip of the “stakeholder” and bend the fate of healthcare.

History Repeats Itself

At some point between the 17th century and today, private enterprise washed over industry and in some instances became impossible to regulate. Capitalism, left unchecked, gave rise to corruption and caused numerous industries to collapse. Sometimes this happened more than once, dragging innocent people along through every hill and valley. The dotcom crash of 2000 or the recent housing crisis are two such examples. Now, we’ve arrived at the midpoint before the collapse in healthcare.

Big data is big business. It’s also a weapon, a disturbing tool in the hands of “stakeholders”. They have the most control over the use of big data in the healthcare system, but there is a problem. They don’t have a stellar track record of helping people, or being honest. Big data is ammunition, and corrupt “stakeholders” are hoping to use it to define the industry’s future.

For those in the data community opposed to this takeover, allowing it to happen is akin to giving away the keys to the death star, and watching the rebels suffer in a hospital waiting room for nine hours.

Once again, history is running its course. In healthcare, “stakeholders” saw the opportunity early. Since the mid-1960’s when Lockheed unveiled its clinical data management system, healthcare data attracted the hands of those interested more in profit than the needs of the patient. Consider this recent example. In 2006, the Certified Electronic Health Record System (CCHIT) was created to accelerate healthcare IT by promoting data interoperability and security. Later it was found that CCHIT had “too close for comfort” ties to the Healthcare Information and Management Systems Society (HIMSS), a lobbying agency serving the interests of technology vendors.

These same “stakeholders” are trying to capitalize on the “big data revolution in healthcare.” They are ambitious; grasping at even the smallest opportunity in an attempt to establish a hold.

A brilliant investigation on saline prices highlights this fact. Nina Bernstein of the New York Times found that:

At every step from manufacturer to patient, there are confidential deals among the major players, including drug companies, purchasing organizations and distributors, and insurers. These deals so obscure prices and profits that even participants cannot say what the simplest component of care actually costs, let alone what it should cost. And that leaves taxpayers and patients alike with an inflated bottom line and little or no way to challenge it.(“How to Charge $546 for Six Liters of Saltwater,”The New York Times, accessed Aug 30th, 2013. )

As of today, healthcare is rife with more “stakeholder” corruption than any other multi-trillion dollar industry. Do you really trust them to do the right thing? Do you trust them with big data? With your data?

These are our lives, and the lives of our family and friends. But patients, who are seen and referred to as “customers,” have little control or capital to do anything to change the status quo. This paints a bleak picture, especially when we look at emerging technologies and USPTO filings.

Mobile healthcare is set to take off, but almost half of the top twenty mHealth patent holders aren’t even mHealth companies, or even medical device developers.(“Is Mobile Health About to Enter a Patent Thicket,” MobiHealthNews, accessed Aug 30th, 2013.) This is an example of the proactive nature of the “stakeholder,” aggressively preparing for future leverage in the healthcare industry. It is an attractive offer to those well versed in the game of unchecked capitalism.

The role of the patient within such a healthcare system is one that is inherently helpless. Patients, the real stakeholders, are stuck in a market of inelastic demand. Perhaps, “inelastic choice” is a more appropriate term. If this isn’t the real definition of a free market, I’m not sure what is. Industry is preparing to use big data to capitalize on the patient’s role in health, their inability to say “no”. However, saying “no” is starting to become easier.

Just Say No to Healthcare

Patients no longer dream about a fix in healthcare. Now, it’s easier to just give up. They aren’t buying into the system that “stakeholders” control anymore. This should be alarming. Medical tourism made headlines a few years ago. As the principal consultant and shareholder of an experimental stem cell clinic located off-shore, I saw first-hand how far people would go to undergo treatments inaccessible in the United States. These treatments were expensive and technically experimental. People paid out-of-pocket to be lab rats, because our healthcare system in 2005 could not provide them with modern and accessible care at a reasonable cost. But today, people “just say no” to basic healthcare.

During my wait, four of the prospective patients got up and left. They left the hospital. They didn’t come back. The true “health” of a patient is measured by their quality of life. And the effect the healthcare system had on the patient’s “health” was greater than the prospect of living with what could have very well been a life-threatening medical condition. Four people made a decision: their health was no longer worth it, and they gave up. Not counting myself, that was almost 40 percent of the people in the waiting room that day. Think about that. It was a near perfect lesson on how to develop a system to lose a person’s trust. And along with lost trust comes the loss of opportunity.

Emotional Healthcare

Martin Henry Fischer once said that, “in the sickroom, ten cents’ worth of human understanding equals ten dollars’ worth of medical science.” We can’t let the gleam of big data and technology blind us to this fact today.

The research I conducted over the past year extended my focus on interaction design, user experience, and empathy through the healthcare gauntlet. I found that people didn’t care about healthcare, but they did care about other things. And my creative being began to intertwine those external things that people care about, with some of the clear problems within the healthcare system: costs, outcomes, and lack of communication.

So I began designing solutions to make people’s lives easier outside of the healthcare system. But the trick was to also find ways to tie those external experiences that people are so receptive to, back into healthcare.

I tried to make healthcare invisible. As a first step, I looked at how medical records were digitized. This proved to be a worthless endeavor on the level of user experience design.

I moved on to examine the application of dashboards, but this also failed every last test of user experience. After a few more trials, I found that the integration of healthcare data into applications such as Instagram and Facebook provided a first step to creating a solution, because it finally got patients to care. This was juxtaposed to simply having a single application directly related to healthcare.

This type of approach should be the primary focus of those in the data community who believe in a system wide patient focused change in healthcare. And this should happen before patients become too disenchanted. Because then, the opportunity to approach them with technologies that can quickly proliferate across a wide range of demographics will be lost to the “stakeholders.”

We as data thinkers and makers have a responsibility to use data to create tools that re-engage patients and give them the leverage needed to prevent the takeover of healthcare. We have to make the patient’s big data, stronger than the “stakeholders” big data.

To be sure, there are big corporations that are working to solve big problems with big data. An example would be the use of big data in genetics research. Also, big data doesn’t necessarily mean a massive quantity of data. There are data designers working with smaller data sets. They are trying to do the right thing by putting patients and their interests first, even if it means less or no financial gain. But these people are few and far between.

If we look at the McKinsey report once more, they fail to acknowledge how control is distributed in the healthcare system. To reiterate, we should view the report as a warning. Many if not most “stakeholders” are putting their interests first, and they are powerful. To change this, we need to engage patients and design systems that give them more control of the system from the ground up. Patients are the true stakeholders in all of this, and with the right kind and amount of help, they can push back.

Technology is overrated. Understanding the intrinsic nature of people is more important. My mentor, the late Red Burns, hoped for her students “not to see the world as a market, but rather a place that people live in,” and she challenged us to prepare for “designing for people – not machines.” (Red Burns was the founder of the Interactive Telecommunications Program (ITP) in the Tisch School of the Arts at New York University. You can read more about the magic she brought to the world of technology in WIRED.) This applies to the world of big data today. The responsibility of data thinkers and makers is to understand patients better. And the healthcare McKinsey envisions is not my healthcare; at least not the healthcare I want.

What we can do, as skilled people, is begin designing tools that affect a person on the level of their being. We are the only ones who can help the patient push back against a healthcare system fated by the “stakeholder” class. We need to think about why a person gives up on healthcare and walks out of a hospital. We need to design tools that patients can use directly to improve and enjoy their daily lives. These tools need to have an impact on the things they care about, almost all of which have nothing to do with healthcare. It’s our responsibility to do this because working with data is complicated. A patient can’t be left on their own to harness it and utilize it.

People don’t want to be responsible for analyzing a torrent of numbers that are thrown at them, even if the numbers are their own and quantified to make things “easier.” People are emotional creatures, devoid of a desire to constantly analyze. They only want what was promised to them: life, liberty and the pursuit of happiness, along with a dose of healthcare that doesn’t get in the way of those things.

Breaking Routine

We are at a crossroads between seizing opportunity and turning into mere lab rats for expensive procedures beyond our control. A chance exists, to start a shift in healthcare by using design, a powerful tool that interacts with a person on the level of emotion.

We can re-engage and inspire “customers” and not only help them transform back into patients, but to do so with a new found leverage that can potentially echo through the entire healthcare system. To start a real shift, we have to make people feel like they matter again, instead of feeling like another chart hanging on the front of an examination room door.

After my appointment, I glanced at my chart on the way out of the examination room. The word “routine” was stamped on the front in red ink. I guess that meant that I was supposed to be an easy case: a metaphor for nine hours of my life. Just another troublesome day in the routine.

Data didn’t change my fate, and I never expected it to. I’d be less cynical if, during my stay, I had encountered a technology that prevented three members of staff from asking me the same questions, or kept me from seeing two doctors and six additional members of staff that day in total. How about some technology that can convey to the staff that it’s a bad idea to have them all leave, and come back with lunch, while the patients wait, watching re-runs on the Food Network. Not having to take the mandatory drug screening would have also been a plus.

But really maybe the real fix would have been a mobile or at-home technology that kept me from going into the hospital in the first place. That’s not routine, but it should be.

Thirteen Minutes of Care

Hungry and exhausted, I walked through the waiting room following my 13-minute appointment. Two prescription refills printed on nice paper pricked the inside of my clenched fist. That is the meaning of “routine,” by the way.

My eyes leveled with a man’s who had spent the entire day waiting with me. Tattooed and short in stature, he had cleanly cropped facial hair. I remember him engaging in an argument with a nurse earlier in the day regarding an HIV test that was administered to him without his consent. His turn was coming up. He gave me a head nod, and it felt like a congratulations for making it through a battle in one piece.

Of all the doctors, nurses, and staff I met that day, none of them gave me the same respect this man did. The feeling was mutual. We had the shared understanding that comes to people who have gone through a trauma together.

As soon as I got on the train home, I would start sketching designs for an iteration of a mobile application. Another addition to a notebook full of trial and error. But I felt good knowing I was at least designing for the one part of healthcare that mattered most.

People skilled in the art of data have a rare ability to understand it and make it valuable. It’s important to reevaluate who we are really designing for, and what the long standing impact of our work will be on the lives of patients. What’s good in the short term isn’t always good years down the road.

Data tells a story: it’s true. But sometimes the story that is told is just on the surface. We have many good reasons to work with big data, and to try to influence healthcare. But good reasons are not always the real reasons. Find the real reasons, and maybe then, data really will start to matter.